My Story Name: Age: 22 My address is: You can contact me on: I want my story to be public but NAME WITHHELD About my journey I acquired Lyme-like illness either from California, USA or North Queensland, Australia. I left Australia in July 2013 to travel to California, USA. Type of Bite: unknown I was sick for approximately 2-5 years before I was diagnosed I have positive blood tests from Igenex USA and Australian Biologics, with negative blood tests from Australian Rickettsial reference Laboratory. I tested positive for Borrelia burgdorferi, Borrelia afzeli and Borrelia garinii. I have seen 12 doctors and medical practitioners in my journey, including a cardiologist, rheumatologist, dermatologist, optometrist, two neurologists and six general practitioners. I have been admitted to hospital 4 times for my illness. I have also been diagnosed with Epstein Barr virus, chronic fatigue syndrome, Postural orthostatic tachycardia syndrome, complex partial seizures and ovarian cysts. I have been advised I am unable to receive disability payments as criteria includes all treatment to be completed and condition to be stable. My life Prior to my illness, my life as a child was pretty standard. I danced from 6 years old, had two head injuries but was otherwise well. By the time I was 15 I was dancing approx. 15 hrs a week studying VCE fulltime and had a part time reception job a couple of nights a week and Saturday mornings. At the end of 2010, 17 yrs old I was diagnosed with severe glandular fever, was very unwell and hospitalised. The following year 2011, I was diagnosed with chronic fatigue syndrome (CFS) and postural orthostatic tachycardia syndrome (POTS) as a complication of the glandular fever and toward the end of year 12 was forced to defer and repeat the following year via distance education. I then recovered adequately to enrol in a double degree of Nursing/Midwifery fulltime for 2013. In April of 2013 I had a laproscopic apendecotomy for assumed appendicitis, however it was revealed that the pain was caused by a burst ovarian cyst. During the procedure 2 more ovarian cysts were discovered which were not operated upon. In July 2013 my dance troop and I travelled to California, USA to perform and travel for 10 days. In August 2013 I received compulsory immunisations for my University course including the polio, Boostrix and Twinrix vaccines. In September 2013 I received more compulsory immunisations, one of these was a second full dose of the polio vaccine (as opposed to the booster) due to an administration error. Two days later I started having seizures every 2-3 hrs, which continued for a week. After two visits to separate GPs it was decided I should be admitted to hospital to be under observation due to ongoing seizures and tachycardia. I was discharged 5 days later with the hypothesised cause of my ailments attributed to migraines and EEG revealing non-epileptic myoclonic seizures. I presented no further symptoms until March 2014. I then started having seizures again every 3-4 hrs for 8 weeks, they progressively worsened lasting 3-5 minutes at their peak and making breathing very difficult due to intense spasming of my spine and diaphragm. This inability to breathe was so severe that during my hospitalisations the staff were planning to intubate on two separate episodes and administered oxygen each time. I had muscle aches and pains, myoclonic jerks and fasciculations. My seizures progressed during this time to include an inability to speak directly before and after the episodes. At its peak, this symptom lasted up to 4 hours, this has since been diagnosed as dysarthria. I was admitted to hospital multiple times during this period, twice by ambulance. The worst occurrence included a seizure lasting 40 minutes where my muscles stiffened and my speech didn’t return until I awoke the next day. During these admissions I was given multiple neurological tests including MRIs, CTs, EEGs and neurological evaluations. All tests were inconclusive leading to an assessment by a neuropsychologist, who gave a clear report with no psychological cause. I was then discharged with a suggested diagnosis of either migraines, anxiety or psychogenic seizures. I experienced sporadic petechial rashes on my face and neck around this time (approx. 10 separate times), a dermatologist was consulted and a biopsy taken. Results showed nonspecific inflammation, inconsistent with eczema and other skin conditions. Also, my blood pressure fluctuated wildly, mostly associated with my seizures, systolic pressure dropping as low as 60 immediately before and up to 180 during such episodes. My heartrate was consistently very high, resulting in prescription of beta blockers and blood pressure medication by a cardiologist. Both medications I am still taking, as I recently tried to wean off however the symptoms returned quite severely. I saw a rheumatologist during this time who suspected I had an autoimmune disease. I was tested for every common condition including lupus, sarcoidosis, rheumatoid arthritis, etc, all of which were negative. I was referred to a neurologist given the inconclusive results and her suspicions of neural involvement. Following consultation with a neurologist, he suggested continuing to see my cardiologist, prescribed further medications (endep and a migraine medication) and referred me for an MRI and EEG (both of which were clear). The only other option in his opinion was epilepsy medication which he stated would have serious adverse effects. He gave an inconclusive diagnosis and dismissed me as he stated he could provide no further help. In the course of trying to improve my symptoms I saw a Traditional Chinese Medical practitioner who prescribed various supplements and herbs, and administered acupuncture on a weekly basis. Given a lack of diagnosis the help he could offer was limited. My symptoms gradually decreased in magnitude with my seizures disappearing completely by May 2014. Some symptoms persisted such as mental fog, lack of coordination, fatigue, low and sporadic blood pressure, tachycardia, numbness of the extremities, myoclonic jerks and occasional petechial rashes of the neck and face. This state continued until another relapse occurred in February 2015 where my prior symptoms returned, including gradually worsening seizures. This relapse lasted 4 weeks, during which time we consulted with a different neurologist who could not give any answers but suggested epilepsy was a possibility but without catching a seizure on an EEG he would not be happy to treat, and my cardiologist was similarly unable to diagnose the condition. The pattern of relapses continued in April 2015. It was suggested that I see a holistic GP by my osteopath (who I was seeing due to back pain). Following consultation with the holistic GP she suggested a radical elimination diet where I eschewed dairy, gluten and high histamine foods. I followed this diet along with my current lifestyle choices of vegetarianism, no smoking and no drinking. After 5 months my symptoms were unchanged and I discontinued the diet after an additional relapse including seizure occurred in August 2014 for 3 weeks. In October 2015 with my residual symptoms still occurring (note: no seizures), it was suggested I consulted with a Lyme literate GP, who strongly suspected I had an intracellular bacterial infection. Numerous costly out-of-pocket tests were conducted travelling to Sydney for blood tests and sending blood to a laboratory in the USA. All tests came back indicating Lyme disease specifically 3 forms of Borrelia which had infected my CNS (officially diagnosed as neuroborreliosis in December of 2015). The GP unfortunately could not treat the disease at this time, however he gave me referrals to further doctors, including an infectious disease specialist in hope of their cooperation in creating a treatment plan and administering antibiotic treatment. In anticipation of intense antibiotic treatment the GP referred me to a naturopath for immune systems supplements and support, all of which are out-of-pocket expenses. This naturopath recommended eliminating gluten, dairy and sugars from my diet to minimise inflammation, again in anticipation of further treatment. I have recently (beginning of January 2016) started having seizures again, they are following the same pattern of worsening day by day, having multiple each day. All other symptoms are also gradually returning with the addition of temporary lower limb paralysis following my seizures and some residual numbness (most recently lasting 10 minutes). With no current option for governmental support I have initiated (with the help of family and friends) a fundraising campaign to cover the exorbitant costs of sustained antibiotic and other treatments available. Presently, no treatments have been initiated though with upcoming doctor’s appointments I hope to begin recovery. The impact Transport by family and friends: Due to my determination in keeping up with University, placement and appointment commitments with medical recommendation not to drive during seizure relapse periods, the burden of driving me around often falls on my family and friends. For example in the past, my mother has driven me to hospital placement twice a day for 4 weeks taking 40 minutes each way on top of her commitments with three special needs children and our medical appointments. Loss of independence: If no transport is available I am often housebound and at the mercy of my illness. My family are hesitant to leave me home alone due to the possibility of a severe seizure relapse which further limits their freedom. Often if I’m quite unwell, this will even limit the ability for me to cook, care for myself and perform activities of daily living without assistance. Financial strain and loss of income: I am unable to hold down a job due to the sporadic nature of my symptoms. My last employment in 2013 was as a medical receptionist in my chosen profession which I thoroughly enjoyed and was forced to let go due to illness.